Video: The PACE trial: a short explanation, Graham McPhee

Love this video and its simplicity in explaining some of the ridiculous things wrong with PACE. Have just Tweeted it; I'm not much of a presence on Twitter and have only a few followers but hopefully they will pass it along too.

 

Graham you could do a parody of Blofeld stroking his cat, sitting there in your gentle manner stroking George as you masterfully expose PACE!

 

Reminds me of a simplified version of the ESA capability to work questionnaire heavily criticised for being unfit for purpose; I imagine the DWP thought it perfectly adequate.

 

Wow, another fine video from Graham and another fine photo of George! The day couldn't get any better.

 

That video is absolutely brilliant. Not only does it strip away all the jargon so I can finally understand exactly why PACE was such a pile of crap, but watching it has increased my score from 35 to 40. I now plan to watch it another 12 times - my 'recovery' will be complete!

Will you count it is as a success if people say they feel encouraged to take a more active part? No need to collect data on whether they actually do take a more active part, you will have made your point and can head of to the newspapers to trumpet your findings.

Of course you can, there was nothing wrong with the patient's health in the first place so there's no improvement to measure. Trying to measure it would just validate that there was something wrong in the first place, which is the belief we're trying to change. Why undermine our success? Changing the belief is all we ever wanted to do, it was the only thing that needed doing, and we did it!

Unevidenced claims about the efficacy of Graded Travel Therapy? Do be careful @Graham ...

 

The OHC say something similar in their own research:

"The study found significant improvements in participants belief they could change their situation and the symptom of sleep after only 8 weeks."

http://www.theoptimumhealthclinic.com/research-overview/publications/

so how do you measure belief?

 

@Action for M.E.
This perhaps illustrates the main issue and explains why CBT and GET don' t work.

 

Ooooh! Nice one, @TiredSam ! The only question is how many sessions will it take?

 

With a questionnaire!

 

Second video is now available

https://www.youtube.com/watch?v=YpReMPpZhVQ

 

@Graham , there is repeated dialogue in your voiceover starting at 5:34 - either that or it's a glitch in the matrix.

 

Thanks @Andy : I've just been loading and checking the subtitles and came across it. There's a word I said to myself. I'm trying to find out if I can edit it in Youtube, whether I have to upload it all again, or whether simply to issue an apology underneath! I didn't think many people would be that quick off the mark.

Thank @Trish . It's a tricky one that I puzzled over. The scale only permits you to score multiples of 5, so strictly speaking the borders are correct and the green and blue rectangles cover the correct area. I decided in the end that people would listen to it and not bother too much about things like that - it is for those who find the usual analyses too heavy going.

 

You're a maths teacher - nit picking has been surgically implanted in your very essence.

 

Sorry to be nit-picky too, but there is an issue with the whole recovery cut-off thing that keeps being ignored. It seems to have become a bit of a meme this thing that you could enter the trial with a score of 65 and yet be recovered with a score of 60. It's just not true. The recovery criteria also required an improvement of 20 points to qualify as recovered (in addition to a 8 pt decrease on CFQ and no longer meeting Oxford criteria). I know it's a small thing, but the PACE authors will always have an advantage if that "flaw" keeps being used.

[Edit: Sorry for getting the details wrong - I'm seriously losing it!]

 

Well, I did say it was the recovery target for that questionnaire.

In the third video I intend to cover the "four" criteria - three are questionnaires and one is a diagnosis from a doctor that can be over-ruled by a questionnaire.

They didn't require an improvement of 20 points in fact, nor did they demand an 8 point decrease in the CFQ. That was back in the early days before they changed everything.

They ended up with targets of a score of 60 or over for the sf-36 physical function, a score of 18 or less on the Likert version of the CFQ (which again can overlap with entry criteria, and which was obtained from a similar calculation of the average and standard deviation), a tick in the box that the patient feels much better or very much better, and a diagnosis from the specialist that the patient no longer suffers from CFS.

However, that diagnosis is overruled if the patient score 70 or more on the sf-36, OR scores less than 6 on the bimodal CFQ. In other words, if they no longer meet the entry criteria, the doctor's assessment is overruled. That would imply that all the patients who had a diagnosis of CFQ but were not eligible for the trial because their symptoms were not severe enough, would no longer be classified as having CFQ – a 100% success rate for the fifth group of patients with CFQ not mentioned in the trial of those who couldn't take part.